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At least that was what it was like during my visit with the doc today. I took a list to go over with him.

Actually things went pretty well, I think.

I have a referral to an orthopedic doc for the joint issues and another to the dermatologist for my annual check up and freeze-a-thon (the result of growing up in the desert in the 50s and 60s before people had heard of any type of sunscreen and instead used baby oil.)

Then there was the abdominal pain. After some discussion, poking and prodding, it was decided I should switch from Omeaprazole to Protonix.

Not bad so far. Three down, two to go.

Next came the PN discussion. It hasn't changed any for quite some time. No worse, no better. So, status quo will be OK for now.

Then came the biggie, at least in my eyes. the lipohypertrophy.

First, I loosened my shirt so he could check it. Yep, he said. it looked like there could be something going on.

Then, he had me remove my shirt. While standing in front of me, he was impressed. He said the exercise is working and I was developing a nice six-pack.

Made me feel pretty good.

Then he walked around back. Not so good.

His comments started something like this. "Hmmmm." Then, a little deeper, "Hmmmm."

Then came the, "Harumph, Hmmmmm," as he felt around the top of my spine.

"Yep, that's what it is. Its really noticeable when you take your shirt off," the good doctor said.

"Thanks doc," said I.

Then he noticed the lumps on my neck at the base of my skull.

"Do you have any lumps anywhere else, like on your thighs or elsewhere?" Doc asked.

"No, just the top of my back and the front and back of my neck, I think," I said. I mentioned to the doc there were areas I cannot see and I have no full-length mirrors at home, thank goodness.

So, he checked. Nope, no other anomalies.

We discussed the matter and I am now the proud owner of a prescription for Sustiva. I had thought about waiting until some new classes of drugs come out. But the doc said he feared the situation would worsen, perhaps considerably, were I to wait too long.

I agreed. So, its out with the Crixivan and in with Sustiva. I will continue to take the Combivir for the time being.

Its been a wild ride, these 11 years I have taken Crixivan. I managed to get past the kidney stones and stick to a regimen that many others would balk at.

Now, I guess its time for a change. I have to admit, I am somewhat nervous about this. It is the first time since May 1996 I will be taking something different.

On the bright side, I can forget about the meal schedule that has ruled my life for more than a decade.

Whoopee, I can eat when I want!

On the down side, I have to start a new med, look out for side effects and remember not to eat before going to bed.

The doc said he would be watching me for signs of psychotic behavior. I promised not to bring sharp objects into his office.

Mark: Yes, I am on Sustiva also and used to make the mistake of eating with it before bedtime. My, what tricks the brain can play!!! I was having some of the worst nightmares I had ever had. I never knew, until I read the patient information sheet that came with Sustiva what was actually causing it. Good luck, sweetie! Peace-Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I have a referral to an orthopedic doc for the joint issues and another to the dermatologist for my annual check up and freeze-a-thon (the result of growing up in the desert in the 50s and 60s before people had heard of any type of sunscreen and instead used baby oil.)

I hear ya Mark. I remember the baby oil routine, very well. Shortly after I moved to Florida, someone recommended that I put Wesson cooking oil in with the baby oil. What a mistake that was. I was slow cooking on the beach that day !! Lesson learned. I never go out now, without a sunscreen on. I see the dermatologist, almost as often as my hiv doctor !! Good luck with the dermatologist and orthopedic appointments !

Then there was the abdominal pain. After some discussion, poking and prodding, it was decided I should switch from Omeaprazole to Protonix.

I am not familiar with those medications. Was reading a little bit on the protonix. Said it may inhibit the absorption of B-12 into the body ( this is long term use) , so you may want to consider a B-12 supplement. Good luck with this new med !!

We discussed the matter and I am now the proud owner of a prescription for Sustiva. I had thought about waiting until some new classes of drugs come out. But the doc said he feared the situation would worsen, perhaps considerably, were I to wait too long.

Wishing you the best here also Mark. I can really sense how difficult this is for you to make this change, after being on the crixivan for so many years. Back in 2004, when my doctor decided to add viread to my regimen, I held on to that prescription for almost two months, before I finally filled it. I am glad I did though.

One of the things I think about often, is when that day will come when I will have to change meds. I've never been on the PI's yet.

As Allan stated, Sustiva is a powerful drug, so here's to continued success with your numbers !!

Oh, if you get too psychotic, we will just have to slap you around a little !!

12 years on Crix?? That is amazing. That garbage destroyed me,maybe my dosage was too high, cause I was in one the early trials. I took it for less than a year.Two large tennis ball sized lumps on the back of my neck. I looked like those fuckers in the star wars bar. Hump. Double Frozen Shoulder. became addicted to painkillers. Fuck! Lost 30 pounds at first. Lost all body hair. Hospitalized with severe stomach pains. I was carried into the ER,shaking and totally white. Bunch of morphine and was better the next day. I have no idea what it was and either did the docs. When all this type of stuff starts happening you wonder if you are dying and maybe death will be an improvement. Looking for sympathy.As we always say the drugs are different for everyone.

Mark, thanks for the straightforward, sobering but by no means totally discouraging report of your visit.

I'm glad you have a doc who is really paying attention and who also seems to have some sense of humor -- something we know you possess in admirable quantity.

Along with well known challenges related to taking Sustiva, it is a mighty potent drug for the good and hopefully it will work its magic on you without turning too dark. Keep us posted and remember to check in here if you're having bad dreams, black cloud thoughts and other like stuff.

I read your post with frank amazement...your'e so pragmatic about whats happening to you, and describe it so well. I'm not so articulate at times but I'd just like to say, good luck with sustiva,(heres hoping no carrolesque effects), enjoy eating again and thankyoujox

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I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

I wish you the best of luck with Sustiva...I know you are reluctant to change your combo, but I think we all agree it's time. I hope that after you change, that hump will go down...my friend Kevin's did, it completely disappeared.

Love & hugs,

Alan (who loves you anyway, hump or no hump!)

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

I am sure you have read that the "no eating" window for Sustiva is about two hours....so you can eat up to two hours before bed. I always thought guys with six packs never ate at all...thats why they have a six pack and I look like I have a keg!

I also made the switch to Sustiva in early Feb because of skyrocketing trigylcerides. I have gotten my first lipid panel back two days ago and they have been cut in half from 800 something to 400 something. I have started fish oil (which I think you told me about.) I also switched off the Combivir to Truvada. Basically, I take Atripla before bedtime. I have been fortunate. No side effects to speak of for three months and better lipids. Like the others have said...some unusual, but rather interesting dreams. I get them every night and can usually remember them. Hopefully, you will tolerate this well.

I'm not on sustiva so no comment. I do take Reyataz, Norvir, and Truvada in the morning and still have weird-ass dreams at night. Morning regimes seem pretty good to me but then I'm not working with the public so maybe that's why I don't see any adverse effects, including the drunken sailor.

Now I wouldn't mourn the loss of Crix. I mean just because you've taken it for 12 years doesn't mean that's necessarily a good thing. There are certainly far better things in life to get attached to than your HIV meds. Those lumps in the neck sound nasty. Time for them to go.

I think you'll be OK as long as the Coyotes stay away. From what I understand it can be bad sign when they come around at night at start howling.

For most the "drunkenness" feeling passes after a few days. I have read about this with other posts on Sustiva. I take Atripla (which includes Sustiva)...but its the Sustiva that causes the funkiness. I think it has something to do with balancing the amount of drug in your bloodstream and the fact that this drug crosses the blood-brain barrier. For most of us, this part passes. I hope it does for you especially because this is such a well-studied and effective medication.

Sorry for the confusion in my earlier post... I only take Atripla which contains Sustiva and Truveda.

I still get the drunkenness, Mark, and I've been on Sustiva for years (8 years? I don't remember anymore). I've always assumed it had something to do with Sustiva being pretty effective at crossing the blood-brain barrier, although I don't think I've ever actually read that anywhere.

I would post and read more--and perhaps feel a bit more connected to these forums--if I weren't in such a fog from it, to be honest. Sometimes it's difficult to focus enough to corral even a few thoughts together for a long enough period of time to type them out.

Not to entirely discourage you, though...I still feel better on a daily basis than I did on crixivan or any of the PI's...and the hump stopped growing (and even decreased some) as soon as I switched.

Well, its been a week now and I am functioning a bit better. I think, well maybe.

I still have the fog and if I don't get 8 hours of sleep, I feel the drunkeness.

I was supposed to go on a trip to Laughlin with friends this weekend. but cancelled. I had two doctors, a nurse and a therapist tell me it wasn't a good idea at this time. Not to much the being in Laughlin, but the 9-hour drive to get there.

So, I'm rather bummed about that. I had looked forward to this for a while. It is just such a nice getaway.

Of course, I would probably have spent most of the day in the hotel room, because I really don't function all that well around crowds at the moment and I am so foggy I can't seem to shake it.

I also seem to be a lot more emotional. During the past few days I would just become instantly enraged at things. Usually stupid, uninimportant things. Out of nowhere.

Today, I just feel depressed, which is unusual for me. I hope this passes soon.

Hey Craig, if I hadn't started getting the hump, I wouldn't have switched from Crixivan. I never had too many problems with it, aside from minor kidney sludge.

I started Atripla while on a Palm Springs vacation (I figured why not foul up someone else's bathroom.) Actually, being away reduced the stress significantly. I did not realize for about a week that it was the Kaletra (which I thought I tolerated fairly well except for skyrocketing triglycerides) that sent me frequently to the bathroom. On Atripla, I don't have very many of those "rush" trips anymore. Nevertheless, a nine hour car trip might have been challenging...so you were good to yourself.

I am trying to put together a few days in Vegas myself. Get yourself back to Laughlin when you adjust. A little celebration is in order!

Some people who have had problems with the psychological side effects of Sustiva switch to Viramune (another NNRTI) with very good results. Another good thing about Viramune is that it doesn't raise cholesterol and triglycerides as much as Sustiva.

I'm curious - here in the UK treatment would never commence with readings like that - you need to get down to a CD4 of 200 or less before they consider starting treatment

It's particularly relevant in my case, being 11 years positive, and with a CD count usually between the mid 300s and the mid 400s for all of that time, with a VL 115,000 at the highest point but currently 12,000. They're not talking treatment any time in the foreseeable future.

If I'd been where you are, I guess I'd have been on meds for a long time now.... Is there something relevant I'm missing?

Mark, Now, now, let's not be too hasty and blame everything on the meds. The emotional thing is probably just menopause I hope that things clear up soon, and you go back to being your regular mellow old self. Hopefully we will see your smiling face soon down here in the big city, it would be fun to see you again.

Capt.Carl

P.S. When you get cranky, may I suggest finding a serious bottom in need of a good healthy spanking? If you can't find one there let me know and I'll FedEx one to you. Just let me know desired physical characteristics

Hey Mark: I hope you're doing better on the Sustiva. I have to get eight hours of sleep also and sometimes take a nap during the day. Keep us posted!Betty(BTW, I quit smoking two days ago after being on the Chantix for a week. I'm wondering how you're doing on it Mark).

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

One good thing for subbing ice cream for nicotene is that the fat can help with absorption of Sustiva, even if it will likely worsen cholesterol impact. Still, it's good to hear HIVers giving their bodies a break from nicotene addiction.

Well, I have come to the conclusion that Sustiva and I are probably not going to be long-term buds.

I had four or five days of feeling OK, but the last few days have been terrible. I can't think straight and can't concentrate.

The emotional issues are returning with a vengeance. I feel depressed, anxious or angry most of the time.

So, I have made an appointment with my doc for Monday and we are going to have a heart-to-heart.

I would even go back on Crixivan if need be. At this point, I can handle a buffalo hump a lot easier than I can these Sustiva side effects.

I hate the thought of switching again. I rather feel like I've failed, although at what I don't know. I gave it more than two months, but things are just not settling down.

Also, my triglycerides have gone up enough the doc is talking about adding Tricor to the mix. I already take Zetia, Pravachol and 4,000 mgs of fish oil a day to keep the lipids in check and he wants to add a fourth drug to address something probably caused by the Sustiva.

Things have been bad enough I have even considered skipping my meds. As I mentioned to one of our members here, for someone as anal as I am, that is not a good sign.

I feel lousy about wanting to switch meds, but I basically feel lousy anyway, so I guess it doesn't matter.

Mark, I don't think that you need to feel bad about switching meds. Don't ever forget that it is a quality of life issue. When it gets to the point that you start having to take meds just to counteract the side effects of other meds, it becomes a snowball rolling downhill. Remember the bad old days when we all knew someone taking upwards of thirty pills a day? Most of those meds were needed for that very reason. Changing meds is a good thing if it will improve the quality of life. Remember, you haven't failed the meds, they've failed you..... Much luck to you.

Well, I have come to the conclusion that Sustiva and I are probably not going to be long-term buds.

I had four or five days of feeling OK, but the last few days have been terrible. I can't think straight and can't concentrate.

The emotional issues are returning with a vengeance. I feel depressed, anxious or angry most of the time.

So, I have made an appointment with my doc for Monday and we are going to have a heart-to-heart.

Mark

Sorry to hear that things aren't working out with Sustiva. Having never been on Sustiva, It's hard for me to imagine all this . It's best that you will be talking with the doctor again. No need to go through this.

Darn I hate to hear you're having such a difficult time. I'd hoped the increased emotionality would eventually subside. But based upon this one comment by you:

Quote

Things have been bad enough I have even considered skipping my meds. As I mentioned to one of our members here, for someone as anal as I am, that is not a good sign.

It's definitely time to dump that darn Sustiva and move onto something else. As someone else said, you didn't fail, it failed you. So put those thoughts out of your Sustiva fogged head right now mister or else!

Let us know what you and the doc decide. (Could a simple switch to Viramune work? Would that be a strong enough regimen?)

I'm sorry you're still having problems with Sustiva. It is not a failure on your part that Sustiva doesn't agree with your body chemistry.

I hope you and your doctor will come up with a regimen that will be easier to take. However, I hope you don't go back on Crixivan. There are other PI's out there that are so much easier to take and which are not as likely to cause lipodystrophy.

It's very common to have to switch meds because of intolerable side effects. I've been constantly adjusting my regimen over the past 17 years, because of side effects, resistance issues, and sometimes for the sake of convenience.

Having been on one regimen for 11 years, you appear to have an idea of being faithful to a regimen. It's an admirable trait in human relationships, but it can be very detrimental when it comes to dealing with meds.

Sorry Mark it isn't working for you. You have to do what you have to do. I couldn't take kaletra, but unlike you I quit and I didn't tell my doc till I went in three months later. It's weird how some things work well for some and not for others. I'm sure you'll find something that will work well with you. Let us know on Monday.

The doctor visit went pretty well. We talked about the issues I was having and the doc agreed the Sustiva just wasn't working out.

He even complemented me for giving it "the old college try,' and sticking it out for more than two months.

So, we are exploring options at this point. I am still taking Sustiva until I switch, mainly because trying to quit my regimen now would involve some tricky timing because of the length of time Sustiva remains in the body.

I don't want to screw up the NNRTIs altogether.

We talked about Viramune, but the doc was concerned because of the potential for liver problems because my CD4s are too high. (Now there's an interesting idea.)

Men with CD4s of more than 400 have a higher potential for developing liver problems with Viramune and my CD4s have been more than 1,000 for a long time now.

We talked about it and agreed I would probably be looking at another PI. Crixivan is probably out at this point because of the lipodystrophy problems it caused me, but the doc said there are other options which carry with them fewer problems with lipids and lipodystrophy, such as Kaletra.

He's going to do some more checking and confer with a doctor in Albuquerque and get back with me, probably this week sometime.

The doc also asked me about my PN. I told him it was pretty much unchanged and still manageable without pain meds.

He also reminded me that I needed to see the dermatologist. I had forgotten. So, I'll call and make an appointment.

That's where things stand. I will be changing meds, but I just don't know which new meds we are going to try.

Ask for Lexiva and Truvada, I'm been on both since they came out and I am having no problems.

I feel for those taking Sustiva, I participated in the clinical drug trials for Sustiva before it was approved. It does cause problems with the mind, I remember one night sleep walking naked outside my house only to be awaken by a cop.

Eventually, Sustiva showed resistances to the 2 of the 4 virus mutations I have and never taken it since. Of course, most the meds out there, I am resistant to as well, not to mention AZT.

Hang in there, something will come your way....

BTW, I have yet to see my CD4 go higher than 327 over the past 4 years, wanna give me some of the tcells? lol

Logged

32 years poz LTS with no expiration date

Diagnosed HIV 1982Diagnosed AIDS 2001

As of June 2015, VL <20 CD 435 26%

Currently taking a daily total of 17 meds while only two meds for AIDS, the rest for other body organs effected by years of retrovirals. Diagnosed with Lung Cancer 2012, COPD Stage 4 2015, IBS 2013, Chronic Cystitis, Chronic Renal Failure, Hearing Loss, Depression and everyday comes with different health episodes which has sent me to the Er via EMS on a regular basis. My quality of life has been impacted dramatically.

Much as I might kvetch about my pill load, kivexa,norvir and invirase, (along with a cocktail of pain/anti sickness meds)they work for me. I sometimes have a little difficulty because drug names are different in US, so forgive me if I sound a little dumb sometimes. Mark, you've done the 'sustiva shuffle', you kept at it, doesnt work...I sincerely hope and pray that whatever is prescribed next gives you NO side effects and an undetectable VL, at the same time as peace of mindxxx

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I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

I couldn't handle sustiva years ago as I was trying to do graphic design school and find work. Then with those horrid nightmares I'd wake up a couple times a night in a frightful state. One time I turned off teh computer so I was in the dark and heading a well known path in my apartment to bed, but I saw an electric green snake twisting in on itself like a 3D image in front of me, I closed my eyes to shake it and there it was still inside my head. That night I had 2 nightmares I actually recorded in comic book style drawings. I was going to make movies of them in graphics on the computer and enter them in the Gay and Lesbian film festival. But the Dr heard about my nightmares and said we'd try something else. Gone were those lovely nightmares and the inspiration to put the whole bunch into a film...... One friend said the title, "Sustiva Dreams" might get me in trouble. lol

Tho I'm dating a guy that takes Sustiva every day and works a big career that demands many hours a week. I don't know how he does it.